I am a woman living with HIV, a single mother of two HIV-negative sons, an immigrant, a public speaker, and an advocate. Medicaid expansion, made possible by the Affordable Care Act (ACA), has given me the cushion I needed to overcome some of the worst trauma of my life to be the fierce survivor I am today. I hope that my story will help people understand why the threat to health care access now before the Supreme Court, in the form of Texas v. United States, is a threat to all of us.
I had been in the U.S. for only a year when I was diagnosed with HIV in 2003 at age 19. Until the day I got the news, things were finally looking up for me.
Running for My Life
Moving to the U.S. was not in my plans at all on the day that my partner, whom I lived with, punched me in the face. He hit me on the bridge of my nose; I was bleeding and the inside of my mouth was torn up. He called my job and told them that I was sick and wouldn’t be in to work for a few days. I knew that I had to get away from him.
My mother heard what had happened and called me. “If you don’t leave him, I’m going to end up burying you,” she said. I began planning my escape.
My uncle who lived in New York came to visit. He found me at my work and asked me what I was planning to do. At first I didn’t understand what he meant, but as we talked, I realized that he knew what was going on. I told him I was hoping to go to England with the rest of my schoolmates to continue my studies, or to go to America. He told me I would go back to the U.S. with him.
That was on a Friday. I went back to my apartment, took all my clothes, and went to my uncle’s house. On Monday, I was on a plane to New York.
I never went back to Saint Martin.
One Step Forward, Two Steps Back
My life had been a whirlwind since I had fled that violence — and my home — but things were getting better. I was in school to become a medical assistant. One day, I went to a public clinic in downtown New York, got a pap smear, and took an HIV test. I felt perfectly fine; I just had a feeling it was something I needed to do.
Over the phone, all they told me was that my pap smear had come back abnormal, and to come back in for follow-up. A clinic employee took me to his office, opened a file folder, and then just shoved it in front of me: a document with a big red circle and a plus sign in the middle. He didn’t say a word — he just put the paper in front of me and walked out.
I started crying; I was hysterical when he came back in the office. “What does this mean?” I sobbed. He just walked back out the door.
A moment later, a nurse — a Black lady — came in. She rubbed my back, spoke to me gently: “You know, sweetie, HIV is not a death sentence anymore; I am going to refer you to some good people.” She took me down the hall to an exam room, where she sat me down on the exam table and told me, “We’re going to get you care. We’re going to get help for you.”
My mind was spinning; all the dreams and aspirations I had had for myself were swirling like water down the drain. I’ll never have kids. I’ll never have a career. I’m going to die.
I don’t even remember how I got home that day.
Things didn’t get better right away. I felt like a part of me had died; yet at some point, I worked up the strength to start calling down the referral list the nurse had given me. The first couple of numbers I dialed went unanswered; nobody ever got back to me. Finally, at the last number I called, someone answered.
My case worker at that agency is still a friend of mine to this day. She helped me get ADAP for my medications. Because I was undocumented at the time, I was ineligible for Medicaid or any other programs. She helped me get my first primary care and infectious disease doctor, whom I went to for a long time.
Her assistance was crucial at a time when I needed it most. But ADAP only covers HIV medications, and Ryan White only covers HIV-related care. My life had turned into an emotional rollercoaster, and I needed more.
Thanks to the help with housing, I had moved out of my aunt’s place into my own apartment; but once I was there, I began spiraling into a deep depression. I would start taking my meds, then stop. I attempted suicide; the doctor and my case worker made me write a letter stating that I would never harm myself again or anyone else. I didn’t have health insurance, so didn’t have access to the mental health care I needed.
In 2005, I found myself pregnant with my first son. Though I was still depressed, things were starting to improve. I married my son’s father the next year and was able to start the process for getting my permanent residency (green card). I started going out again and integrating myself back into the world. Even though that relationship did not work out and we separated, I was finally able to get my green card in 2007; got a real, decent-paying job; was finally eligible for Medicaid, because of Medicaid expansion.
Around this time, I also met my second son’s father. I had my second son, and the relationship was fine for a while. But in 2012, I woke up one day and realized the life I was living wasn’t what I really wanted. I wanted better for myself and my children. I started going to classes, doing things a little differently. And in 2014, I finally decided that I did not want to be with him anymore and broke up with him after five years of living together.
Things were looking up again. I got my GED in 2015, and in 2016, I became a phlebotomist and started my AA for medical science and massage therapy. I felt good about the direction of my life. But I was soon reminded how fragile and tenuous upward mobility can be.
The downhill slide began when my landlord told me I had to leave my apartment. I found a new place, but as I was going through the process to secure it, I lost my job.
A coworker was complaining to me about everything happening in her life. Her problems seemed quite trivial next to what I was dealing with — HIV, single motherhood, the pressure of having to find a new place to live in such an expensive city on such short notice — so I made the mistake of sharing some of my own challenges with her. I hoped to make her understand that, despite some problems like everyone has, she still had a lot to be grateful for.
Instead, I got fired.
Of course my employer did not say they were firing me because I was living with HIV. They claimed I had lied on my application and had withheld information about working at another property before going to work for them. The union did not help me, either. In retrospect, I should have sued.
I was homeless for two years after that.
Even as I went through all of this, Medicaid allowed me to maintain access to the care and medications my two children and I needed.
In October of 2017, I decided I had had enough of hiding and running away, and I went public with my HIV status through a Facebook Live. Even though doing this came with some repercussions from family and friends who, believing they were looking out for me, wanted me to take the video down, it turned out to be the best thing I could have done for myself. I have been the happiest I’ve ever been in my entire life living with HIV for the two years since then.
Looking back, I realize that if I had had someone like me in my life earlier in my diagnosis, someone who could have helped me navigate the positive sides of disclosure, I may have spared myself some of the anguish and depression I lived through. That’s why I have dedicated myself to education, inspiring, and empowering people living with HIV.
The ACA’s protections help people like me make it through our darkest days.
If we really want to end the epidemic, we have to have real strategies; we have to build a real continuum of care that fits the realities of real people’s lives. We have to understand that stable housing, economic justice, and access to comprehensive health care, including primary, mental, reproductive, oral, and vision care that doesn’t depend on living in poverty are all critical elements in making sure that people living with HIV can live long, healthy lives. With those factors secured, we can have the physical and mental wellbeing we need to adhere to our medications. This is how you end the epidemic — not by cutting Medicaid, not by gutting protections for preexisting conditions, not by slashing housing and food programs that help some of the most vulnerable among us stay afloat.
Life throws us into predicaments we never thought we would have to navigate. I am a survivor of intimate partner violence, HIV, and depression. All of these are considered “preexisting conditions” by insurers. Any one of them had the power to kill me at certain points in my life. I have overcome these obstacles to be a strong, resilient person who tries to help others who find themselves in similar situations.
Recently, the Supreme Court announced that it would hear the case of Texas v. United States — a lawsuit brought by conservative lawmakers in Texas that would strike down the entire Affordable Care Act. If they choose to side with the plaintiff, I know for sure that people like me would lose access to the care and medications we need. Ryan White and ADAP are intended to be a last resort; without Medicaid and the protections for preexisting conditions that allow others to have private insurance, we would have to rely on that last resort for our HIV medications, but would not have access to the care we need for any other conditions we have, from diabetes to pregnancy to depression.
Through Medicaid expansion, the ACA has helped my family and me survive some of the hardest years of our lives to be able to tell our story and advocate for what people living with HIV need today. The days that I had nothing but ADAP are among the darkest in my life. I hope that we can build and improve upon the ACA rather than going back to what we had before: no protections, no access, no hope.
Thamicha Isaac is a mother and HIV survivor.